Anyone else get bloating and abdominal pain from NETS or Lanreotide?

4 nights in the hospital after the surgery. Eating mostly plant based diet plus fish. No red meat and low fat as the liver is compromised. I seem to be able to eat more calories then before surgery so im assuming the SINET was a causing a partial blockage for some time before becoming worse. I will continue monthly Somatuline depot shot coupled with quarterly MRIs to track progress or changes in NETs.

Good to hear, @stevestenberg31!

Ill continue monthly Somatuline depot (Lanreotide) shot to contain cancer. Quarterly MRIs will determine future action or status quo.

@stevestenberg31

I so appreciate the update about your surgery. You explained the situation so well.

I am glad to hear that you are doing better post-surgery. That sounds like a very extensive surgery. How long were you in the hospital after the surgery? What type of eating plan are you following now?

Are there any follow up treatments being planned?

Thank you for sharing. my husband has P-NET. and was getting Sandostatin shots monthly, they gave him Lanreotide and he got sick, but I said that could be lack of enough food, etc. and it was his first shot . She said they are basically the same? He also had 3 liver embolizations which I would like to hear more about yours? I am interested to hear about your treatment and what are you doing next? God Bless and keep fighting! I'm a 3x survivor so I'll sit on the sidelines! Thank you be well
Joni

Follow up to this. The tumor in my SI must have been causing a partial blockage. The pain got so extreme i went to the ER 11days ago. A CTScan with dye indicated the SI had wrapped around the NET blocking the SI. Next day surgery removed 8inches of the SI, the primary tumor, and gallbladder. 10 days later still recovering from the surgery but able to eat more food without bloating and associated pain. Gaining weight after 5months of weight loss.

Hello @kathleenandbob and welcome to our NETs discussion group. I am glad that you shared how you are able to find silver linings as you deal with this disease. That is important in dealing with any chronic illness like NETs and carcinoid syndrome.

I had my first surgery for NETs in 2003 (my third surgery was in 2016), so that makes me a 20-year survivor. Like you, some days are better than others, but I too am grateful.

If you are comfortable sharing more, when you had surgery (Hemi-colectomy) for the primary NET, how long were you hospitalized? What changes have you made to your eating habits?

This site is new to me. I was diagnosed with NET and Carcinoid Syndrome in 2013. Found by accident when being worked up for abdomenal pains and diarrhea. CT showed liver tumors. Not until 2014 during surgery to remove tumors did the surgeon visual the primary at ileocecal area. Hemi-colectomy removed primary.

I have taken Octreotide in the first few years and then Lanreotide depot monthly. My diarrhea is manageable. Tincture of Opium (to stop spasms and pain and diarrhea when eating) and Oxycontin twice a day to constipate me...has been my quality of life saviors. After a few years of this routine, I can plan time away from my bathroom.

On diagnosis 5 years was expected longevity. My doc said he had a patient living with this 10 years!
I am now 10 years out and my scans and labs are still ok with no detectable new growth. As hard and painful as this disease can be....I am still here.

I do have days that I cannot explain to myself why I feel so awful...but then a good day. I have found my symptoms debilitating at times, but I am still here (72). It is my belief that our uniqueness makes trying to answer all the questions we may have. If I have to continue this miasma of symptoms....I will....I struggle with depression about all this, but when I see my grandchild and family....I am thankful. My advice....continue to treat yourself and be thankful for each day.
KPM

I will have my 4th injection next week. My symptoms include the tumor pains, chills, wetting flatulence, dizziness and fatigue. I am unsure if it’s the radiation, chemotherapy, cancer, or the lanreotide. My team is monitoring as I progress through the treatments. My hope is that my body acclimates to the medications and that the medications are working to to keep the cancer in check.

Blessings to all
CEB

Hi,

My husband experiences the same symptoms after his Octreotide injection. Bad diaree, fatigue, fevers, vomiting, shivers, and overall weakness. This can last from 5 to 10 days.
When we discussed this with the oncologist, she mentioned that if he is not getting this, he will surely pass away as this injection assist to stop cancer growth and body pains. He has carcinoid tumor cancer (4th stage).
He will go tomorrow for his 7th injection.